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I turned 40 in March of 2018 and had basically been ignoring the recommendations for early screenings of mammograms (should have had them starting at 35). I felt I had time, and quite frankly wasn't ready to deal with "all that cancer crap" again. THEN my Dad suddenly died a week after I turned 40 (he was 70). He died of a heart attack, longtime overweight and high cholesterol seemed to be the contributing factors.
Dealing with his estate and the household I grew up in just spun me up thinking nonstop about my Mom. I missed both of them so much and her most of all. She died in 2007. All I had been thinking about was her and her cancer death.
OK. Cancer was back to haunt me. I'm 40. I better get my shit together.
In November 2018 I had my annual GYN appointment, where I had requested the extra ultrasound I had 10 years ago to check for cancer. The nurse practitioner said I was perfectly healthy, my cycles were normal and there was no justification for the additional screenings. I asked about all my family history of cancer and asked how that alone didn’t justify additional screenings. She said if I wanted to get screened for cancer, I should go get genetic counseling.
So I did...
My, how far we've come. I love technology and science.
I booked the appointment for genetic counseling in December of 2018. I remember feeling slightly nervous walking into a Cancer Center. How many times I had been here with other family members...so dreadful. Never good news in my family. They all had long, ridiculous, exhausting battles and they all died. All of them. I'm not kidding. We don't seem to have those nice survivor stories in my family. No beating it and living for the next 20 years. I'm not very optimistic about the cancer thing.
Anyways, I met this genetic counselor and we discussed all the cancer in the family, all the relationships and she mapped it out. My family history gave a clear picture of what is going to be covered by insurance. And since there was so many different types of it, I could be tested for all the genetic types and variations they know about. Which at this time is 34 genes they screen for. Causing all kinds of cancers. Cool stuff. She said it was unlikely that I would actually have a gene mutation - only 10% of cancers are genetically related I guess. She didn't think anything would show up. We booked a follow-up appointment in January to review results.
I said YES, I want to be tested for everything. Why not? I kind of *knew* I'd have something show up. It’s been our family slogan - yeah, we all know we are going to die of cancer and we probably all have "the gene".
We set a follow up appointment in January 2019 to discuss results.
Back to the cancer center.
The genetic counselor (GC) walks in with another “learning student”, sits down and looks at me.
GC: Well, you have a BRCA1 genetic mutation, I really didn’t think you were going to have it.
Me: [I actually freaked out. HOLY. SHIT. I imagine it is a lot like hearing you have cancer, because this is what it felt like to me.] OMG, Now what?
GC: This means you have up to an 87% chance of getting breast cancer, and a 40% chance of getting ovarian cancer in your lifetime. You are considered to be at high risk for these cancers. This means you are eligible for additional screenings – annual mammograms/ultrasounds and breast MRI’s (staggered every 6 months) and annual ovarian ultrasounds. Or there is a chemo option. Or there are surgical options. We recommend removing your ovaries between age 35 and 40 (I was 40) and having a bilateral mastectomy now. What do you think you want to do? [All I hear is whah whah whah, blah, blah, blah]
Me: [I just cried/laughed and looked at her like she was an alien. My whole world just changed. THIS IS A BIG DEAL. Whoa. Surgeries? Chop off my boobs, cut out my ovaries?! WHAT the fu-zuck is happening?? I just wanted to run out of there (and this is not ever me, I’m the cool, calm, collected engineer that handles everything in a solid, controlled, logical/engineer brain fashion. Well...not this. At least not in this moment!)]
I think I’m going to need a minute to collect myself and think about my options and absorb this cluster. And I'm sitting here ALONE. Why didn't I have Kevin come with me? Never even gave it a thought.
GC: Why don’t we just set up a follow up meeting in a month? This would be February.
Me: {sarcastically} Yeah – sure, Mom died on Feb 19th, let’s do it then….!!
GC: Oh gees, let’s avoid that, how about March then?
Me: Sure that would be better…
And I went home and took some time to reflect. Then immediately reached out to a friend of a friend that my sister-in-law reminded me had gone through this exact scenario. Chatted her up about the options, felt better knowing someone that had gone through this. That is exactly what I needed. Someone that “gets it”.
The next two months were a whirlwind of wrapping my head around “chopping off everything that makes me female”…because with those odds, there is no other option. I AM NOT going to go through what my mother did if I can help it. She did not want to die, and I'm not ready to entertain that option either.
Once I wrapped my head around what was happening, I thought it would be a good idea to jump on the screenings. I had just had my first mammogram in November of 2018, so it was about time for my first breast MRI. I booked that for early March 2019. She asked if I was claustrophobic, I said not really, but I’ll take the drugs if you have them, the anxiety about everything was starting to freak me out. She prescribed one pill of some sedative for the MRI.
Side note on anxiety - I also ended up asking my regular doctor to prescribe some anti-anxiety meds for “if-needed” because I felt like I needed a break if it was all too much to deal with. It was like pulling teeth, but I finally got a script for Xanax, which I never ended up taking, but is nice to have if I did need it.
So, the breast MRI. NOT FUN. Mind you, this was my first IV, my first MRI, my first leap into the medical world for my own things and my own experiences!
My MRI was on a Saturday. Must have had the weekend crew. I explain this is my first one, I’d like to know how it goes. The IV was ok. Not a big deal, they put it in the middle of my elbow crease and will use it for putting dye in during the last part of the scan. She says it will feel cold when it happens.
The tech comes in and I tell her the same thing about being my first time.
I ask her about it, say I’ve heard it is loud, like machine guns. She turns red (she appears to be shy and doesn’t know what to say to me), looks at me and says that they are all different. OK…. Give me a little more than that? What does that mean?
At this moment, I know I should have taken the sedative…
She takes me in the MRI room and shows me how I need to lay on my front side on this contraption where my boobs hang down. It is a little strange, a little uncomfortable having your ribs sit on this hard bar, your arms are out over your head like a diamond shape. She sticks a ball in my hand and says squeeze this if you need to talk to me. UM OK.
Then she asks me about music and I say something and then she puts ear plugs in me and large headphones on and I say whatever is on is good. I can barely hear the music, but I don’t know to ask for the volume to be turned up…
Then she slides me into the MRI machine and I start to panic and focus on controlling myself…I can feel how tight it is and wow, that is a nerve-wracking feeling, but I’m happy I’m face down and there is breathing space. She leaves. I have NO IDEA what is coming next. Just breathe...keep breathing...like yoga, waves, work, whatever makes me happy...just don't panic....ok I'm panicking a little.
The silence and wait are awful. I have no concept of time. I have no idea what to expect.
Next thing, she comes back in and says OH, the coil wasn’t plugged in. WTF does that mean??? Jesus, I'm not going to make it. How to calm myself? Keep breathing...in, out, in 1-2-3, out 1-2-3.
She leaves. Then the NOISE. HOLY. HELL. Nuclear bomb sirens are going off. Did I hear this test is going to be AN HOUR?? OMG, I’m not going to make it. All I can assume is that this was some kind of machine calibration. After that, it gets quiet again and I can barely hear the music and think, gees, I wish she told me I would want the music louder.
Then the scans begin in interestingly extremely LOUD banging and ringing series of noises. JESUS. And I have ear plugs in. WOW THIS IS LOUD. Like so loud you can’t even think. Good news is that it is rhythmic, which kind of passes the time. I’m trying to think of anything that might calm me down. This goes on for what seems like an eternity. Series of scans. My arms are going numb. My ribs hurt. I carefully and slowly try and wiggle a little bit, hold myself up a little bit. UGH. This is NOTHING like they show on all my favorite TV shows lol!
Then it gets quiet. There is a pause in the music at the end of a song and all of a sudden I hear her talking saying the dye will go in now and there is about 10 minutes left. WHAT? HAVE YOU BEEN TALKING TO ME EACH SCAN???? Why did she not tell me this? Seems obvious, but you aren’t thinking about this when you are so nervous about what is happening.
OK. 10 more minutes. I got this.
Then everything stops, and is quiet. For a long enough time I’m thinking she left me here. I panic some more and then she finally comes in and I’m just thinking get me the fuck out of here. Except, I can’t get off the table. My arms are numb and I need to wiggle around before I can lift myself up! Oye, but happy that was over.
YEP, definitely doing the surgery…I don’t want another MRI EVER AGAIN. Which I’m sure is not realistic, but that is what I want.
I’m sure I’ll be better prepared next time. Take the sedative…!
Keep in mind, most people have a decent experience with techs that talk them through it. I think I was just unlucky.
About 3 days after the BRCA1 positive appointment I had fully decided I was going to have the surgeries. I figured the one thing I have is time, so I took the next two months to absorb what was going to become a ridiculous year. I was still dealing with my dad’s estate and trying to sell properties and I already had a full time job. This was going to get crazy.
February was a sad month, it is always tough, remembering my mom and missing her. This particular February was riddled with a friend’s mom going through a similar nightmare. I had a really tough time with it, given everything that was going on. She ended up dying within 2 days of my mom’s death, the whole thing was surreal. I was beside myself.
March 2019 – follow up with the genetic counselor – turned out to actually be an appointment with a breast oncologist. I didn’t know this, but the genetic counselor booked me with her because I hadn’t decided on surgeries, so thought this might be the plan I chose. I walked in ready to ask about surgeries, so it was more of an informational session. This oncologist was wonderful, and she discussed the cancers and types and what was likely for me. She said surgery really was the best option. There is a chemo option – you could take Tamoxifen for 5 years and statistically that shows better results, but for BRCA1, she sees more of the “triple negative cancers” and doesn’t think that Tamoxifen helps as much for that. Greeeeaaaaat.
She recommended a pair of surgeons – one breast surgeon (the one that does the mastectomy) and a plastic surgeon (that does reconstruction).
While the time is passing, I start to become a little angry about it. I’m mad. I’m mad that I have this gene. I’m mad that I didn’t find out sooner. I’m mad that I have to chop of body parts. I’m mad because my boobs, as small as they may be, are perfect. Are symmetrical. Are MINE. And now they have to go. Perfectly healthy. My ovaries, they work great, I have perfect cycles. I have to cut them out. They are perfectly healthy organs. This is disturbing. I don’t want to do this.
I don’t want to have to do this.
And this phase sucks, because you have to not be mad when trying to move on and put the plan together, because this has to be OK. You can’t do all of these crazy things and not be OK with it.
I hoped this phase passed quickly. It took a while. But I’m still mad occasionally.
Next step, meet with the surgeons and work out the boob plan. May 2019.
Breast surgeon. She walks in, I have questions ready. She tells me to wait, she’ll run through her pitch first. This annoys me, but ok. She basically says she will scrape all my breast tissue out reducing my risk of breast cancer from 87% down to 5%. The general population is around 10-12% risk. Cool. Breast tissue goes all the way up to your collar bone, all the way under your armpits and down to the bottom fold of your breasts. Yes, that is a major surgery. Any questions? No, I guess not. All the reconstruction options are discussed with the plastic surgeon.
Plastic surgeon. The physician’s assistant walks in and has this attitude. I already have an attitude today. I do not want to have to do this. I am mad that I have to chop my boobs off. I’m just not feeling it, but I’m interesting in hearing all my options. Anyways, the PA asks what size I am, what size I want to be, why am I here, etc. Do I want implants? Well, I’m here to find out what my options are. She opens up a tiny pamphlet and shows me three options that have 2 sentences each that basically say I can have boobs made from my back fat, my abdominal fat, or implants. She asks, so what option are you leaning towards? WHAT? This is all the information you are giving me to make this determination???? Are you kidding me right now? I again tell her that I’m here to see what options I CAN have….do I have enough fat to do any of these other options? She says, well what option are you leaning towards?
At this point I want to punch her in the face.
I tell her probably DIEP flap (the belly fat) or implants. I don’t know because I don’t know what I qualify for. Get the hell out of here.
Then the surgeon walks in and treats me like I’m a confused individual. But she does say that if I wanted the flap surgery, I probably don’t have enough abdominal fat to create boobs that would be the same size as I am now (I feel like that isn’t possible, but ok). Then I realize she is an implant surgeon and if I want to have the flap surgery I would go to someone else. Makes sense. So onto the implant plan.
I have to ask her about implant types, she says, oh, the PA didn’t show you the implants? OMG, this is not going well. I explain that I’m here to learn about my options, do share how to make these decisions…lol. Then she finally goes through things a little bit. She does implants, under the muscle. If I wanted them over the muscle, then she would review my remaining skin at the time and make the call – game day decision.
The basic process is you have the mastectomy and at the same time, the reconstruction. The plastic surgeon inserts these temporary “tissue expanders”, which are basically harder, expandable implants. Each week or two over the next four to six months you go in for fills to expand your muscle and skin to the size you want to be and at the end of that process you go in for another surgery and have them swapped out for regular/final implants.
I ask about pictures. She pulls up files folders, not organized by type of surgery, just folders of people’s names and their pictures. The first few pictures just happen to be of people with issues. She is NOT organized about this. What did I miss here? I begin to think somehow this meeting might have been misinterpreted for something else.
I’m ready to leave, thinking that I don’t know what else to do, so let’s tentatively book the mastectomy surgery for September, since this has to happen anyways, I guess this is what it is.
She recommends that I go to a breast cancer support group to figure out my options. Really? Thanks for nothing.
Late June, I found a local support group from the FORCE website. This was nice timing because I wanted to hear about other people’s plans, and most importantly who their surgeons were so I could get a second opinion on the mastectomy because I was not really happy with that first appointment.
The support group was great, it was local, specifically for folks that have had genetic mutations. Some have had cancer, but most are previvors. I think I’m going to keep going throughout this journey. They meet every other month for an hour or two. It is super helpful to talk to people that have been through it and people that have a similar situation.
I walked out of there with a list of the pairs of surgeons and was ready to book the next appointment.
In the meantime, let’s figure out this ovary thing.
Early June 2019. Since my one aunt I think had ovarian cancer, I actually want everything out. I meet a top surgeon in the area and talk to her about my plan. I wanted to do the mastectomies first, then the full hysterectomy. I tell her this, she says ok, but subtly points out that I’m 41 a little late on the ovaries and that the BRCA1 recommendation is between 35 and 40. And that there is no way to detect ovarian and when they do it is too late. I skim over this because I have a plan in my head, boobs first, hysterectomy later. She says, how about we schedule an ultrasound and go from there, come back in for a follow up after that. You got it, I tell her.
That night, I realize everything she was saying to me, I’m late…there is no screening…what am I doing? This threat seems higher now to me, and the surgery is relatively simple, OMG, I need to do this one first!
So CHANGE OF PLANS, I will get the ultrasound and then at the follow up I will tell her I want the surgery.
Early July was my follow up and my scans were good. I told her let’s do the surgery, she said good, right decision. Whew! I needed a little reinforcement, I still was not sure what I was doing. Surgery scheduled for August 9th. Robotic, DaVinci method, laparoscopic. She will take everything – ovaries, tubes, uterus, cervix. The BRCA recommendations are just tubes and ovaries.
Side effects? Early, surgical menopause.
Also early July I met with the 2nd plastic surgeon. When we first sat down and he looked at me and didn’t say anything I thought, oh boy, here we go again. But then we started chatting and though it was a whirlwind of confusing options we intertwined, I knew this guy was the right guy.
He gave me another option. I can get implants first, wait six months or so for the muscle to stretch and settle and THEN do the mastectomy and swap out for a slightly larger final implant. Less pain, less procedures and same outcome.
I’M IN. What’s the next step? (I don't ask too many questions).
He says book a pre-op appointment when you are ready. We usually schedule 4-6 weeks from there for the surgery.
Ok, I’m going to get back to that after my hysterectomy!
August 9th, 2019. My first surgery EVER. Pretty nervous about this. I managed to keep myself busy right up until the day. Surgery was on a Friday, but I traveled for work that week out of town and kept myself pretty occupied. By Thursday night I was actually fairly calm and “ready” for it. Friday morning I cried on the way there, and then I was fine.
They took me back, asked some questions and then started an IV. That wasn’t too bad, they used lidocaine and then someone else was asking me questions so I didn’t really know what was going on. We reviewed the plan, waited a little bit and then the anesthesiologist came in and talked me through some potential side effects. Right after that, he injected me with something, made me woozy, then they wheeled me right into the operating room, had me climb up on the operating table and knocked me right out.
Next thing I knew I was in the recovery room, pretty doped up and comfortable. I only had a little bladder pain, to then find out I had a catheter in. I was super dry and otherwise feeling good. They checked on me every hour or so and I was doing well all night.
The next few hours were getting my bearings and reacquainting myself with my bladder. I felt like I had to pee every 20 minutes, and I did. Getting up was not an issue, the pain was not really existent and I felt good. I had this feeling of wanting to hold my guts in every time I got up, but it wasn’t painful. I was more afraid that it would be painful when I moved around, but it really wasn’t.
They kept me overnight to make sure I was stabilized before letting me go home in the morning. I even slept a little on my side. The most uncomfortable part of the whole thing was what felt like this large gas bubble in my abdomen and chest. It would roll around every time I moved and felt like my organs popped around. But it wasn’t painful. They sent me home on Tylenol. Which I took for a week or so.
I have five incisions, none of which I ever felt. They are surprisingly tiny.
Surgery was on a Friday, I could have been back to work on Monday (I work from home, desk job mostly), but took the week off for my mental sanity, and eased back into work the following week.
This laparoscopic surgery stuff is AMAZING. I ask when does this menopause business start? She says within the next few days…
I was afraid of this. I felt like I was going to become some alien or something. I have no concept of what this means, what this will feel like, or even who to talk to. I wish Mom was here. Though she never went through it because she had a hysterectomy when she was 35 and was on hormone replacement therapy until she got cancer, then she was on chemo.
It basically turned me into a hot individual(!) Night sweats, occasional hot flashes. Nothing bad, just annoying. My internal thermostat is all messed up. I don’t sleep well because I’m tossing and turning from being too hot, then too cold.
But so far, this seems to be the worst of it.
Update February 2020 - MUCH BETTER. Night sweats have dwindled down a bit and life seems to be getting back to normal. Maybe that was the worst of it.
Next stop boobs. Had my pre-op and scheduled my surgery! October 25th.
I was SO nervous for this. Not sure why. Breast implants. Doubling my size. This is crazy talk. That evening and the next day I was so nervous, so many butterflies in my stomach. But this is part of the plan. Stretch first, then do the scraping next. Surgeon says this part is about a week of aggravation and will save many weeks of aggravation after the mastectomy. Sounds great! I like this option, not sure why my stomach doesn't.
I arrive about 45 minutes before, I'm put on a gurney, they start an IV (which was better/easier than my first IV), and I just hang out for a while, freezing because I'm so nervous. They brought me some nice warm blankets and told me everything was going to be ok. Every time I talk about this option/plan, they have never heard of it and I say, sounds like a good plan right?!
Wow the stretch. Doc sends me home with the tightest bra on you can imagine. There is this little pain ball that has pain meds dripping periodically down my implants/muscle. I have no frame of reference for this, but I was fairly comfortable. Bring in a few hydrocodone to sleep nights and this wasn't too bad.
I pulled out the pain ball leads at about 3 days. That was a weird feeling but not painful.
But yeah, you feel like your chest is going to explode. I mean, I just doubled in size! My poor muscles. It was a good solid week of this. Sleeping sucks, I'm not great at sleeping on my back, but I propped up with pillows and it was manageable. And as soon as I was comfortable enough, I started sleeping on my sides again.
I had little hard ropes under my incisions that is called Mondor’s Cords. This was not painful. And it resolved after a few weeks.
After that it was a slow timeline until I felt normal again - probably a good six weeks until I basically forgot about them. But stretching and doing things is different. Flexing the muscles is weird. There is something new there.
Now we just wait. Three to six months to allow things to settle into their stretched out position.
OH, and did I mention at one of my follow-ups, everyone keeps telling me they hadn't heard of doing the implant first...so I asked the doc, how many have you done this way. He says, you're the first....alrighty then! But says this is actually how Angelina Jolie did it...ummm, ok. I guess that's cool then! I asked why haven't you done this before, and he said everyone that comes in already has a mastectomy booked and wasn't willing to wait. I can see that, the panic early on makes you feel like a ticking bomb, but I got over that feeling and wanted to do it an easier way. So here we are.
Ok, back to normal life for a while! My next move is to book another MRI (I really don't want to do this, but I know the surgeon will want me to), and then schedule some pre-ops and get this mastectomy business over with. I'm targeting April 2020. Until then, I'm enjoying my larger boobs. :)
I scheduled my mastectomies for April 27th. I did NOT book an MRI.
But, enter in COVID-19....so I'm assuming this will be canceled, and if not, I may cancel it anyways. I was postponing my MRI, but will now probably need to have one scheduled.
More to follow.
April 2020 - Surgery cancelled due to Covid.
[I later realized this delay was a blessing. I had the time to get more and more comfortable with my decision and my body relaxed and had more time to heal before the big surgery. In fact, I was so calm by the time surgery was rescheduled, that I wasn't even nervous - I was READY.]
As COVID calms down, I call to get my mastectomy rescheduled.
This consists of 2 pre-ops and some blood work.
Plastic Surgeon pre-op, basically discuss that he removes the implants, then the other surgeon takes out all the tissue, then he puts larger implants in to fill the void. This guy is so good, he just eyeballs what he needs to do. He also manages to convince me to keep my nipples. I had done a lot of thinking about this, and was pretty adament about not keeping them, but somehow, in 2 minutes, he changes my mind and I walk out of there with a whole new plan! Which is good. I think the additional cancer risk is truly minimal, and since everything is so preventative and I have the most agressive surgeon in the area, ok why not?
General surgeon pre-op, basically schedules blood work, Covid test and we chatted about nipples. You can tell this office is more conservative and was leaning against keeping them, but I asked everyone if they have had recurrances (or occurances in this case) of cancer after mastectomy. BOTH surgeons said no, and they both have been doing this for 30 plus years...so I'm good with that.
PS Covid test sucks. Just stings. For like a few hours afterwards. Kind of like getting salt water up your nose. Deep. Not a fan.
Other notes - the only thing I purchased for the mastectomy was a shirt that had pockets. I did make two arm pillows, but didn't want them/need them. That might be for someone that has lymph nodes involved.
And at this point, I'm ready. I'm not nervous. I enjoyed my time up until the day, cleaned the house and felt totally prepared! It was amazing, I'm always nervous for this stuff, excessively. But this was now overdue and to be on the other side of it is something I couldn't wait for! I was almost excited. The weight off of my shoulders...I can almost taste it! I will have a shot at a normal life expectancy!
Afternoon surgery. Scheduled for 2pm. No food after midnight and no water after 10am. No problem. Arrive at the hospital at noon. Due to Covid, I have to walk in there alone and no visitors - since my surgery is late, I'll probably miss the visiting hours after surgery. I was ok with that - I know how loopy I am after surgery now, so I'm not up for much talking anyways!
They hook me up with the IV and then I wait. The plastic surgeon has you take a couple muscle relaxers on the way over and this time those made me really sleepy. So I basically fell asleep waiting. I wake up at around 4pm...they didn't take me yet, sheesh, they were running really late.
Surgery ended up somewhere between 4:30 and 5pm, and the next thing I remember was the plastic surgeon walking and talking. Saying something about he decided not to put in the pain ball and that I was going to feel some burning/stinging in my chest because he did extra local anesthetic. I was barely conscious and I remember thinking, yes, my upper chest (under the collar bone) burns!
The next thing I remember is opening my eyes to 9:10pm clock on the wall in my recovery/overnight room. I thought it was late, I felt comfortable and sleepy at this point. I made it. Whew, its over. Then overnight the usual hospital things - they want you to walk around a bit, they want you to eat something and drink, they are in every few hours checking stats, etc.
Kevin came in the morning and I think we left around 11am.
Boobs are there, seem to be a good size, I think a little bigger than I anticipated. I went home with a surgical bra and one drain on each side. Drains are a little lower than I expected (not that I had a frame of reference). Drain opening is covered in Tegaderm. Boobs are brusied - all kinds of colors, mostly purple, a little scary looking. Not sure if that is normal, but I think maybe so with the way I did this process (without expanders). Skin is numb. I can see a depression under my left collar bone. They take a lot of tissue out. I feel ok. I'm only taking Tylenol, the antibiotic, and the muscle relaxers. I didn't need anything more than that (and I'm not afraid to take it if I need it, but I do avoid it when I don't need it).
Most of the week I am on the couch, just relaxing. I'm tired and don't feel like doing much. Watching TV, hanging outside a bit, walked a couple of times. Overall feeling decent.
I don't know what the issue is with the drains, I don't even feel them. The point of exit is a little itchy, but otherwise these things have been fine for me.
At the end of the week - Friday I decide to shower. Slowly, carefully. Managing drains is a pain. I decided to hang them on a lanyard around my neck. A little tough to reach everywhere, and a very tiring experience. I notice after the shower that the blister on the left side has opened up. I call the plastic surgeon's office, and the girl really doesn't know what to tell me. Then I recall I have the surgeon's cell number, so I text him. He calls me back and asks me to come in (now 6pm on a Friday, what a fantastic guy)! He says don't panic yet (I'll try not to). He ends up covering everything in Tegaderm. He's really glad I texted and says so far it looks like everything will survive and it is just the outermost layer of the skin that is dying. We chatted about covering vs. not covering and how the jury's out with burn victims that it doesn't seem to matter for healing. Bottom line, I'm glad I called and followed my gut, rather than suffer through a weekend of unknown and fumble through what to do! He says come back next Tuesday.
PATHOLOGY RESULTS CAME IN - ALL CLEAR!!! NO ATYPICAL CELLS! And though this is the best news, there is a tiny part of me that wished there was something small there...but I'm super happy there wasn't. I firmly believe it is best to be out in front of cancer where you can.
Still healing, mild soreness, mostly tired and more lounging around. Tuesday follow up goes well, he replaces dressings - I can't feel any of this because the skin is numb. (Thank goodness, it still looks awful, and these open wounds look like they would hurt a lot). I have a lot of swelling. He presses out the swelling and says the skin is like a sponge and these areas can be squeezed out to help reduce it. These are hard areas by my sternum. I should note, I have a wide sternum and there is a fairly wide gap between breasts. I have some trapped fluid under the collar bone and by my sternum, way more on the left side. He drains this (I feel nothing). The drains should be collecting this, but are not. Come back in two days!
Wednesday evening around 8pm brings the beginning of my lips swelling. What did I do? Did the dog have something on him from outside when I kissed him? Kevin says to take some Benedryl before bed. I do.
Thursday morning the lip swelling is now my full lips. And my left eye is swelling. Now I'm scared. My scalp itches. Oh no, I'm having a reaction to the antibiotics I think. Can we go to Urgent Care? My next follow-up is at 1pm with the plastic surgeon. Kevin takes me to Urgent Care around 9am when they open. Because of my open wounds and the fact that I was seeing the surgeon at 1pm, they didn't want to do anything. I think maybe I was hoping for steroids, but I guess that was a bad idea because of the healing. Ok, so I guess I'm going to have to wait it out. 1pm follow up with the surgeon - changes me over to a different antibiotic and says take Benedryl. Great. Benedryl obviously isn't working as things keep getting worse, but I'll take a lot of it. He changes the dressings again and drains some fluid. Come back next week.
Thursday evening and Friday, hives. All over. Especially under dressings, near drains, under and around boobs. Covered on my back. In my arm pits. At my hairline. On my forehead. ITCHY. AND SORE. I don't recall ever feeling something like this before. And knowing not to scratch. This is hell. I am careful to call it this, but I was suffering. I cried Friday morning for a while. I felt somewhat defeated. How long was this going to go on for? I tried Lidocaine, I tried LOTS of Benedryl and a Zyrtec. I tried calamine lotion and hydrocortisone. I tried Aloe Vera gel (this actually seemed to help a little on my back). I just felt BAD. I may have overdosed on Benedryl for a day or two. Not sure it was actually helping anyways. We had friends over Friday night to visit and they made dinner. It was a nice distraction, but all I could really think about was my intense itching! I'm sure I was terrible company, but it was actually helpful and nice to have visitors.
And then Saturday morning I woke up and felt ok. They seemed to fade away and the itching stopped. Almost went as quick as it came. Ok, I think I can breathe now and have a normal day. I felt normal enough to visit some family with kids. That had runny noses...
Monday morning - boom, terrible sore throat. Seriously? Here we go. Did I pick up a cold from kids I didn't even really get that close to on Saturday? Can you get a cold that fast? I'm not winning at this recovery thing! But it isn't the boobs that are killing me here...lol!
Tuesday, stuffy nose, awful headache, blah blah blah. Yep, Fall cold it is. Vitamin C packets. Follow up appointment again - replace dressings, drain more fluid. Laugh about coming in for draining instead of fills...he says I like your sense of humor. Wounds are very slowly healing, but you can see progress, so that is good. Come back Thursday.
Wednesday/Thursday/Friday - stuffy, a little runny, a little cough as it moves it's way down (why are all colds the same?) trying various meds, neti pot, vitamins etc. After Tuesday appointment the skin seems to be less swollen. Pressed out more of the edema/swelling and now it seems to have been able to make it to the drains - they doubled in output. Which is a creepy dark red/brown color. Side note, in order to get these drains taken out, the color needs to be yellow/clear and less than 20mL for 2 full days straight. The right side is pretty much there, so doc does take the right drain out on Thursday - YAY! I was scared it was going to hurt, and he said it isn't what you think. Turns out I didn't even feel it. I was like, are you sure you took the whole thing out? He laughed and said yes. Then what are these bands on my side? He says well, the bottom one is your RIB (oh yea, I guess I have no fat covering up my sticking out ribs for now), and the upper one is probably a stitch we put in that will eventually dissolve and flatten. He also says this is the last time he thinks he'll re-do the Tegaderm on the right side. Should be healed enough to maybe end up putting vasoline over it and a regular dressing. I'm also finally feeling a little bit better. One drain out, left side still looking beat up but better. PROGRESS! Time to start stretching things out a little bit.
Feeling a bit better, but the cold lingered all week. Right side is doing well and looking much better. Doc says I can take off the Tegaderm whenever I'm ready this week. Yay!
The day after the appointment, I found a little bump on the right side. Tender, hard, seems to have lots of nerve endings. We'll have to check that out next week.
Going to enjoy the last nice weekend of weather down at Keuka Lake this weekend.
Still not quite 100% over this stupid cold.
Right side lump - doc thinks maybe a little fat necrosis that should go away.
Left side hanging in there, looks like tissue damage might be a little deeper, not clear if there will be scarring or not. Good news, got the last drain taken out. The day after the appointment - feels like there is a little trapped air and fluid rolling around (you can hear it), I'm hoping that will get soaked up by itself. But that will be next week's question if not. (This process feels like it is never going to end).
Side note for reference - Debate was this week, Trump/Biden. What a complete shit show that was.